Oh why must my body react in this way? Sick to my stomach reliving the multiple times I had a MRI and told I had a tumor actively growing. Nausea, dizziness, and inability to catch my breath. ’Tis the time for my scan (I get a brain MRI every 2 months). My MRI is at 1:15pm in San Francisco yet I am sitting on my couch in pajamas and waiting until the last minute to get ready. I suppose it’s a form of denial. I am proud that this feeling only started about an hour ago. It used to go on for a week but through a lot of therapy I am able to reserve these feelings for just the hours before. Fight or flight mode is kicking in as I feel my heart thump faster and faster. Constantly taking deep breaths trying not to let my thoughts wander. I have learned to like early morning MRIs because you get them done before your brain is awake. The waiting in between the exam and neuro oncology appointment is by far the worst part. I appreciate UCSF because I get results and meet with my oncologist hours after the scan. This has saved me so much wasted time worrying this past year.
Endless questions go through my brain like, what is the plan with treatment? Will it change? Will I be on it for what seems like forever? Preparing my mind for the realization that I am a pioneer in the medical field. No one knows yet if this is a cure, what is the correct amount of time to be on treatment, or why I have random weeks of insane sickness. There just hasn’t been enough time and because of this tumor's rareness the study groups are so small. I want answers but I know that I have to be at peace with not getting them. I keep saying over and over that the treatment is working, you have nothing to worry about but there is always that voice that says, Sheila - remember the recurrences, the emergency brain surgeries and seeing your whole life taken from you again and again? The truth is in November I became very ill with symptoms that mimicked a brain tumor. Two weeks ago it lifted and I am feeling like a normal human being but it put a lot of fear in me. Doctors reassure me it’s the targeted therapy toxicity adding up after a year but I need this MRI to put my fears to rest.
The PTSD always makes me feel like I am a sick person the days of my MRI and I hate that. I hate that I try to read the radiologist’s face and when they are extra nice to me after the scan, I think it’s a sign that they see a tumor. I hate that I rehearse in my mind what I will say to friends and family if it’s bad news because I want to protect them. I have found over time and recurrences that watching what this disease does to the people I love around me is way harder than what it does to me.
So this is what it feels like to be in the mind of someone battling a brain tumor. This is Scanxiety. I have to dig deep and trust that no matter what I will be okay because my past has proven so. I am here now and I am okay.